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Carer - the pressure we put on ourselves

CAREME

Registered User
Mar 9, 2021
10
0
I wondered if anyone feels a lot of pressure being a carer / may even put the pressure on themselves? I just think ‘get on with it’ and I then felt how is being a carer any different to being a parent (as you can probably tell I am not a parent hence why I do not see any differences) - parents work full time and just do it, so ”why can’t I as a carer?”
 

Everest1969

Registered User
Jan 9, 2021
42
0
I wondered if anyone feels a lot of pressure being a carer / may even put the pressure on themselves? I just think ‘get on with it’ and I then felt how is being a carer any different to being a parent (as you can probably tell I am not a parent hence why I do not see any differences) - parents work full time and just do it, so ”why can’t I as a carer?”
I think there is a huge difference between the two roles, though I've often wondered the same myself. As a parent you know that your child is going to grow up and become independent, as a carer you know that this is not going to happen and that their needs and dependency will increase. I think in our culture, because we don't tend to live in extended families, then the responsibility of care often falls on the shoulders of one or two relatives. This is a huge responsibilty for anyone to shoulder. In some other cultures (where I have lived) there is the extended family to help as all the family live in the same compound. There isn't as much of the loneliness that we can feel. Just my thoughts. Try not to be too harsh on yourself, it's a job that's a lot tougher than being a parent (even a single parent like myself).
 

CAREME

Registered User
Mar 9, 2021
10
0
I think there is a huge difference between the two roles, though I've often wondered the same myself. As a parent you know that your child is going to grow up and become independent, as a carer you know that this is not going to happen and that their needs and dependency will increase. I think in our culture, because we don't tend to live in extended families, then the responsibility of care often falls on the shoulders of one or two relatives. This is a huge responsibilty for anyone to shoulder. In some other cultures (where I have lived) there is the extended family to help as all the family live in the same compound. There isn't as much of the loneliness that we can feel. Just my thoughts. Try not to be too harsh on yourself, it's a job that's a lot tougher than being a parent (even a single parent like myself).
Thank you for sharing your thoughts. Yes here it does fall to one or two people rather than all the family. Thank you again
 

Alena

Registered User
Feb 14, 2021
29
0
I agree with what you're both saying.
I think that the exact people who become carers (intentionally or otherwise) are likely to be people with high standards, who put pressure on themselves. This sometimes suits other people really well because it means they don't get involved and just sit in judgement instead of doing anything useful!
Sorry, rant over! - for now, at least.
Ironically, I never intended to live one-on-one, as I have seen better, more sustainable ways of living; but it still happened, and lockdown made it worse. My PWD is now in a care home, but I am not recovering quickly.
Friends with small children would echo what Everest 1969 has said. Children grow, change and eventually lead their own lives, whereas a PWD is likely to have increasing needs just as the carer becomes too exhausted to keep meeting those demands.
I think we need not to compare ourselves to those who appear to be handling their lives better - easier said than done, but important to try.
The fact that you're even attempting to care means you're doing better than a lot of the population. I don't know if that helps.
 

Duggies-girl

Registered User
Sep 6, 2017
2,469
0
There is a huge difference between caring for a child and a parent with dementia. With a child you watch them grow and you are rewarded with every new accomplishment (most of the time) with a PWD there are fewer rewards and it is mostly down hill. Also most of us who are parents planned the event (I didn't) so we expect the ups and downs of life with a child. Not many of us volunteer to care for an elderly parent with dementia, it just happens and often we just get sucked into in before we realise what has happened. It creeps in slowly and then whoosh there we are caring full time.

Both roles can be tough but I think caring can be very tough on the carer.
 

jennifer1967

Registered User
Mar 15, 2020
3,165
0
Southampton
caring and raising children are opposite, the children start defenceless and needing everything, feeding, changing washing. then they gradually gain skills to independence. with caring , they start independent and gradually need more and more to be done as they grow more dependent.
i care now for my husband as its part of being a wife. with the age gap we have, we talked about the time when i might need to care for him so that was part of our relationship and marriage
 

karaokePete

Registered User
Jul 23, 2017
5,962
0
N Ireland
Caring can present huge challenges and pressures.

My wife was diagnosed with early on-set dementia 4-6 years ago and the pressure that has created is immense. I had thought that in my early 60's I would be sharing the ups and downs of life and the tasks of daily living with my wife, not taking over every aspect of life for both of us.

I recall one morning when I was leaving my wife to day care and I had a brief word with a lady who was leaving her husband to the unit. She summed it up by saying "I didn't retire with the thought of becoming a 24/7 nurse." It summed it up quite well.

As others have said, children 'progress', whilst people with dementia tend to 'regress' - very different. Even tasks like changing a nappy and cleaning a child - very different to doing the same for an adult who may get agitated because of their embarrassment.

Even simple things like keeping the person amused/occupied is very different. Give a child a tot and a child can use it's imagination to occupy itself for ages. Due to a lack of cognitive ability a lot of people are hard to please as their condition progresses
 

AztecCamera87

Registered User
Mar 12, 2019
188
0
I throw huge amounts of pressure on myself, stress about everything. In two years my hair has started greying and thining. I feel like i am expected to care for my dad, but have never really had any say in it. Social services have been a let down. But also i'm a horridly anxious person, which I think is also used against me.

People always say things like, well you're giving back as your dad looked after you, like somehow caring for an adult with dementia is comparable with looking after a baby.

I'm at a different part of my life than many of you, not that it makes any real difference, but i'm in my early thirties, have only seen my girlfriend around a handful of times in person over the past year (covid played a major part in that as she also has an autoimmune condition) but even before that, having to ensure my sister could stay with dad so I could spend a night or two with my partner was a chore in itself.

I think the major problem with caring for an adult is help is just not sign posted, you need to call up constantly to get basic support, or things which you wouldnt think would be a problem becomes an issue. I have had to leave work on numerous occasions in the past as carers hadnt turned up, or dad's had medical emergencies. Holiday days are used up on appointments.

Amyway rant over!
 

Lawson58

Registered User
Aug 1, 2014
2,308
0
Victoria, Australia
Though Aztec is a younger person in the caring role, many of those caring for people with dementia are older and that raises a whole different set of issues.

Your own health, fatigue and the psychological impact of the loss of the person you knew and the plans you made together make caring for a parent/ spouse a completely different scenario.

Babies bring joy and we all look optimistically to them growing up and becoming wonderful human beings,. It doesn't always work out like that but it is hard to remain optimistic in the face of caring for someone who is declining sometimes slowly but sometimes quite rapidly.

There is no joy when the person with dementia is incapable of having a normal relationship and when the time line goes on for many years without loving responses and the rewards that brings.
 

Janey B

Registered User
Aug 15, 2019
66
0
Northwest
Hi I have read this thread with interest.
As OH has deteriorated and leaving him alone has been more difficult. I have berated myself many times on my feelings of frustration re being trapped and the inability to be spontaneous.
I have compared it to the years when our children were young. When this was the case I never felt like this. So why do I resent it so much now. For one thing I had the company and the support of a caring and loving husband. If I wanted to go out with young children I wrapped them up and out we went but my PWD does not want to go out. The last time I took him out it took me 2 hours to get him organised and by this stage I was extremely stressed. To be honest I can’t be bothered to go through this so we stay home. Have to add here he is happy at home it’s me that gets restless and lonely.
You are right we can’t compare the joy of parenthood and the sadness of caring for someone with Dementia. Although the care and support required is often the same.
With the uncertainty of the future (except the inevitable end) having all dreams and plans abandoned it makes the daily responsibility so much harder to bear.
I’m not depressed but just saddened with it all .
Even the prospect of the end of lockdown does not cheer me like it should. A wasted year my OH has deteriorated so much I am now in my own private little lock down.
Sorry seem to have rattled on a bit feeling sorry for myself.
 

CAREME

Registered User
Mar 9, 2021
10
0
I throw huge amounts of pressure on myself, stress about everything. In two years my hair has started greying and thining. I feel like i am expected to care for my dad, but have never really had any say in it. Social services have been a let down. But also i'm a horridly anxious person, which I think is also used against me.

People always say things like, well you're giving back as your dad looked after you, like somehow caring for an adult with dementia is comparable with looking after a baby.

I'm at a different part of my life than many of you, not that it makes any real difference, but i'm in my early thirties, have only seen my girlfriend around a handful of times in person over the past year (covid played a major part in that as she also has an autoimmune condition) but even before that, having to ensure my sister could stay with dad so I could spend a night or two with my partner was a chore in itself.

I think the major problem with caring for an adult is help is just not sign posted, you need to call up constantly to get basic support, or things which you wouldnt think would be a problem becomes an issue. I have had to leave work on numerous occasions in the past as carers hadnt turned up, or dad's had medical emergencies. Holiday days are used up on appointments.

Amyway rant over!
I am similar; pressure I put on myself is ridiculous. I am in my early 30s and the youngest of quite a big family. I am the one without a family so with Covid it made sense for me to become the carer (my mum was but she passed away with cancer); as you say adult care isn’t easily sign posted and I also find as the youngest there are expectations from the older siblings to do things a certain way. I started to say things to my therapist which were awful and how could I think such things but having this forum makes me realise I am not alone and thank goodness we can all rant away
 

CAREME

Registered User
Mar 9, 2021
10
0
Thanks all for your wise words and making me realise me comparing the role of carer to a parent is very different. What lack of sleep and pressure does to our way of thinking eh 🙃
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,353
0
High Peak
I think another major difference is the status of children/people with dementia. The latter is an adult and therefore has every right to make their own decisions, say 'no' when they want, etc. You can't overrule a person with dementia! (Well, you sometimes can but you have to be very sneaky about it.) If the person is in the early stages and deemed to have capacity, they can make reckless/stupid decisions and there's nothing you can do (well, nothing legal!) So if the person wants to throw their savings off the top off a tall building or bet it all on the horses or give it to a very dubious overseas person who claims to have fallen in love with them.... they are entitled to do so. All adults have the right to make their own decisions, even poor/foolish ones.

If a child says, 'I'm not wearing that! I'm not going to school!' etc, you deal with it even when it means going against their wishes. When a person with dementia says, 'I'm not going to a day centre!' you have to accept their choice.

You would not allow a child to speak to you in the way a person with dementia does (well, I wouldn't!) and you can berate/punish a child, e.g. removing phone/computer privileges for a period of time (or whatever works for you....). You would not allow a child to hog the TV forcing you to watch endless game show repeats. You just can't talk to an adult (with serious cognitive deficits) in the same way you would a child.

The frustrations of dementia are many; the rewards are few. Children tend to be more of a mixed bag... but there is at least a chance of success!
 

AztecCamera87

Registered User
Mar 12, 2019
188
0
Just wanted add something, today I had an email from my work telling me that the flexible carers leave they had over the past few months is stopping at the end of the week, as schools are reopening.

So great to know I will be able to drop my dad off at school during the week from now on! Must be a new initiative! :p
 

Everest1969

Registered User
Jan 9, 2021
42
0
I throw huge amounts of pressure on myself, stress about everything. In two years my hair has started greying and thining. I feel like i am expected to care for my dad, but have never really had any say in it. Social services have been a let down. But also i'm a horridly anxious person, which I think is also used against me.

People always say things like, well you're giving back as your dad looked after you, like somehow caring for an adult with dementia is comparable with looking after a baby.

I'm at a different part of my life than many of you, not that it makes any real difference, but i'm in my early thirties, have only seen my girlfriend around a handful of times in person over the past year (covid played a major part in that as she also has an autoimmune condition) but even before that, having to ensure my sister could stay with dad so I could spend a night or two with my partner was a chore in itself.

I think the major problem with caring for an adult is help is just not sign posted, you need to call up constantly to get basic support, or things which you wouldnt think would be a problem becomes an issue. I have had to leave work on numerous occasions in the past as carers hadnt turned up, or dad's had medical emergencies. Holiday days are used up on appointments.

Amyway rant over!
I think being younger does make a real difference- in my opinion at least. I'm in my early 50s rather than my early 30s and can't imagine having this amount of responsibility at that age. My thirties were my selfish years of enjoyment, especially as I had no children then. For older carers the demands are physically more difficult perhaps, and emotionally its hard whatever the age, but I do feel for you. Don't feel bad for wanting more for yourself . I hope you find a way of accessing more support.
 

Divingdale

New member
May 17, 2020
3
0
I wondered if anyone feels a lot of pressure being a carer / may even put the pressure on themselves? I just think ‘get on with it’ and I then felt how is being a carer any different to being a parent (as you can probably tell I am not a parent hence why I do not see any differences) - parents work full time and just do it, so ”why can’t I as a carer?”
I find myself thinking exactly that all the time. But I think the key difference is the emotional sadness that goes with it. I'm watching my husband disappear before my eyes, as opposed to watching children grow, mature and change in a positive way.

I try not to be hard on myself, but it is almost impossible. I'm permanently exhausted and can't see beyond a future that gets worse.
I feel for you.
 

091558

New member
Oct 10, 2019
4
0
Hi I have read this thread with interest.
As OH has deteriorated and leaving him alone has been more difficult. I have berated myself many times on my feelings of frustration re being trapped and the inability to be spontaneous.
I have compared it to the years when our children were young. When this was the case I never felt like this. So why do I resent it so much now. For one thing I had the company and the support of a caring and loving husband. If I wanted to go out with young children I wrapped them up and out we went but my PWD does not want to go out. The last time I took him out it took me 2 hours to get him organised and by this stage I was extremely stressed. To be honest I can’t be bothered to go through this so we stay home. Have to add here he is happy at home it’s me that gets restless and lonely.
You are right we can’t compare the joy of parenthood and the sadness of caring for someone with Dementia. Although the care and support required is often the same.
With the uncertainty of the future (except the inevitable end) having all dreams and plans abandoned it makes the daily responsibility so much harder to bear.
I’m not depressed but just saddened with it all .
Even the prospect of the end of lockdown does not cheer me like it should. A wasted year my OH has deteriorated so much I am now in my own private little lock down.
Sorry seem to have rattled on a bit feeling sorry for myself.
Jane
Hi I have read this thread with interest.
As OH has deteriorated and leaving him alone has been more difficult. I have berated myself many times on my feelings of frustration re being trapped and the inability to be spontaneous.
I have compared it to the years when our children were young. When this was the case I never felt like this. So why do I resent it so much now. For one thing I had the company and the support of a caring and loving husband. If I wanted to go out with young children I wrapped them up and out we went but my PWD does not want to go out. The last time I took him out it took me 2 hours to get him organised and by this stage I was extremely stressed. To be honest I can’t be bothered to go through this so we stay home. Have to add here he is happy at home it’s me that gets restless and lonely.
You are right we can’t compare the joy of parenthood and the sadness of caring for someone with Dementia. Although the care and support required is often the same.
With the uncertainty of the future (except the inevitable end) having all dreams and plans abandoned it makes the daily responsibility so much harder to bear.
I’m not depressed but just saddened with it all .
Even the prospect of the end of lockdown does not cheer me like it should. A wasted year my OH has deteriorated so much I am now in my own private little lock down.
Sorry seem to have rattled on a bit feeling sorry for myself.
Janey - don't apologise if you are having a moment of 'feeling sorry for yourself'. I have spells like that also and why shouldn't we?
I miss the compassion my husband used to show towards me and having been through a tough time in a few months having lost my elderly Mother and my brother, I felt lost without someone to share it with and a bit let-down because husband was unable to support. I know, he can't help it.
Over the years since diagnosis, I have spent endless hours trying to occupy or stimulate my husband's interest in things he used to like but I have now decided to try to do the things I prefer. Whatever I do is now lost on my husband so I might as well do what I like and he is usually quite content to go along with my suggestion.
At times of my frustration I am always telling myself "well, he can't help it". When I feel sad, upset or less than giving, I now tell myself "nor can I". This stops the guilt I was carrying if I didn't feel like revolving everything around what husband might prefer.
Nothing could prepare me for this life but I do as best I can but focus it on myself also. After all, I can do a lot of things but I can't turn back time.
Take care Janet, I understand and feel for you.
Bee
 

MarLin

New member
Jul 12, 2019
1
0
I wondered if anyone feels a lot of pressure being a carer / may even put the pressure on themselves? I just think ‘get on with it’ and I then felt how is being a carer any different to being a parent (as you can probably tell I am not a parent hence why I do not see any differences) - parents work full time and just do it, so ”why can’t I as a carer?”
When my kids were young, I did everything for them, but as others have said, I’d made a choice and I was happy to see them grow and develop. Yes, I sometimes got stressed and frustrated, but it was always wonderful to see them move on to the next stage in their lives. Now, I care for my mother with dementia and see my own dreams disappearing. I had so many plans for the time when my kids were independent, it was supposed to be the time when my husband and I could go travelling and please ourselves, but now I feel completely trapped. It’s sad to watch someone you care about deteriorate before you, and it’s so frustrating to live the Groundhog Day of the caring role. I know I’m being negative, and every now and then there’s some joy, but mostly it’s grim.
 

PompeyNev

New member
Oct 31, 2017
9
0
What a poignant thread. I agree with - and admire - every one of you. My Dad's Alzheimer's has progressed considerably in the past 18 months or so, and my Mum is at the end of her tether trying to cope. She is 83, has heart failure and a chronic respiratory condition (as well as myriad other complaints) but she considers it her duty as a wife to look after him.
Unfortunately, when my Dad was first diagnosed six or seven years ago, she was in denial for a long while and has never wanted help (arguing that they both promised they would look after each other and not leave it to others).
To be honest, I probably could have done more research, but every time I offer suggestions, they have been dismissed for the above reasons.
I always regard the development of dementia as the direct opposite of that of a child - the brain (and capabilities) diminish and regress, while a child's grows and develops. I try to use that analogy with my Mum but she always takes my Dad's behaviour personally and finds it difficult to separate the man with dementia from the kind, gentle man she married and who was always by her side for more than 60 years of marriage. It's so sad that her abiding memories of him will be of his dementia rather than the 50-odd years that went before.
My sister helps immensely, and less of the toll falls on me, but I feel exhausted myself (I'm 61) and am effectively grieving for the two of them, even though they are both still alive.
So I would urge all of you who care (in all senses of the word) to be proud of what you do but not to sacrifice your own health and well-being out of a sense of duty.
I know what that can be like.
 

Agzy

Registered User
Nov 16, 2016
1,924
0
Moreton, Wirral. UK.
I have fathered four wonderful children in my life and they have brought me more joys than heartaches and so too the times they have become parents in their turn. It just doesn’t compare for me as there are few joys in being a sole carer made worse in some ways by my worries about my kids possible having to take on the same role for me as time goes by.
 

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